Apologies if this subject has already been discussed but I need clarification! I've been at home for 9 weeks now self isolating, my son has been off school and not been out apart from the allowed 1 hour exercise on his own or with my partner.
My partner works for Royal Mail and in a supermarket so we have had no physical contact and he is sleeping in a separate room.
Last week as the guidelines for exercise and meeting one person from a different household were announced my son met his friend at a local park socially distancing.
Does anybody know the rules of what to do if other family members are leaving the house but you aren't? At the moment I'm in the social distancing category, although I haven't been out, but next week I'm due to start Methotrexate so I think I'll be in the middle category?
It's a bit confusing, I would like to know if I can have physical contact with my partner and son or if I need to social distance from them. What are you all doing in this situation?
I am in the states but would qualify for extended shielding in the uk. My doctor just stressed that everyone practice social distancing protocol when we get back to work and school. He told me there really is no need to distance from my own family unless one were ill. Frequent hand washing and wearing a mask when back at school and work should help them not bring it back home in his opinion.
I also found it reassuring that first responders and er workers in nyc actually were less infected than the general public. This leads me to believe proper heigine and masks do help reduce the risk my family will encounter when we reenter public work and schools.
One thing to remember about NYC and health care workers is they are wearing the most intense PPE... gloves plus masks plus face shields plus hazmat suits.
So before they come home, they usually strip all that stuff off, shower, and return to clothes that have not been present in the hospital.
Grocery store workers and mail carriers are not outfitted that carefully or with that much PPE.
Here in the states alot of grocery workers have n95 masks now. Plexiglass shields were added in my state at the end of March for the most part. But yes proper ppe is helpful at the exposure level health care personal experience but for the general public six feet, cloth masks and frequent hand cleaning is most likely very helpful in prevention.
My cardiologists' office never stopped seeing patients regularly and the receptionists only wore cloth masks and none so far have tested positive. The office prescreened patients and took temps before visits. I am in a hot spot in a nyc commute town.
I do think it is worth seeking to your doctors about how much really needs to be done by your specifics.
Just curious, where are you in the states? I was surprised to read your Cardio never closed office, even temporarily. All of my docs went to e-medicine and only done specialists opened up - with restrictions - after about a month. These include cardiology, neurology and rheumatology. Only my neuro has opened to limited appts.
Honestly, none of them until recently has enough PPE. And they are affiliated with some of the best and biggest healthcare institutions. One called me and asked if I could donate / make masks and gloves to their office earlier in the crisis.
Some insight for everyone: read up on protective gear and why distance + gear + cleanliness is the winning combo. Unfortunately the US has failed in getting the best gear and supplies. The virus can get through an N95 mask. It’s that small. That’s why you see ICU/CCU health care workers wearing that as well as plastic shields. For the rest of us, masks, distance and limited exposure are keys to staying safe.
And, unlike my neighbors (!)plz wear masks outside. If you are in any immune compromised state, we’re high risk and it’s not known what the large scale consequences are on our systems.
We follow the strip down procedure in our house after being in public spaces (like a grocery store) and we work from home. Also, masks required the minute we walk out the door and only used once. Immediately in the wash after an outing. I also disinfect items used in public (e.g. credit cards, keys). I’m still spraying down groceries and wiping down packages, but with the new data on surface transmission I’ll prob let up on that a bit. Honestly, it’s exhausting!
It goes without saying hand *scrubbing* continues even in the house when we haven’t been out. Sometimes I think ppl get a little lax on hand washing when they get home.
We’ve gotten the same advice, except more strict on mask wearing. And, for me, I use medical grade gloves in high contact environments still. I’m in CA - Los Angeles County - so our guidelines are stricter than some areas. I appreciate them, tho. And TBH - the masks are saving me on sunscreen 😂!!! A mask with a hat is great for the skin and having to wear makeup. First world problems I know, but I have a semi permanent malar rash and psoriasis on my face, so the bigger the mask the better!!
Back to the matter - if you’re immune compromised, follow the highest level of protection guidelines. Better safe than sorry.
I am in connecticut, the last of our fifty states to open up. We only entered stage 1 on weds. So right now our cases are lower and hospitalizations are down to only 800. I am still sanitizing my grocery and package deliveries but do leave boxes and cans in the sun more now. I do not wear gloves they cause more spread than non gloved frequently disinfected hands do. My cardiologist went on for 5 minutes about the evils of glove wearing while shopping at my last appointment earlier this month, lol.
I learned years ago of a study on colds that showed that eople who washed there hands 6 or more times per day cut their cold infection rates by a third. Another study shows exercise and stress reduction also help prevent infection by a third. I work in a school that was full of viruses the last two years and I never caught anything. I keep purell in my pocket and constantly breath in 7 out 11 to stay calm
The problem with this virus is that is has a long incubation period (2-14 days) during which the person can be infected and not know it, or even have it and not be symptomatic at all but still pass it to other people. So if your partner picks up the virus, he can pass it to you before he even knows he's been infected while doing his job.
Since you are in a very high risk group with methotrexate and immune system suppression, you need to be especially careful. Your partner could have it and also give it to your son by hugging, kissing, etc., then your son give it to you. Children are often asymptomatic but carriers who pass it to others, and some are dying from it too.
So I think for your own sake, until a vaccine is approved, and while you are on methotrexate, you need to consider socially isolating from both your partner and son if they are having contact with each other or other people. Or socially isolate both yourself and your son from your partner so that your partner doesn't pass it to you or your child who can pass it to you.
I know that is difficult, but talking to your doctor might help you decide how risky contact with them is for you.
Hi yes I thought that might be the answer 😔. For the last 9 weeks it's been me and my son at home (my daughter who is 19 moved in with her boyfriend's family and she works in a nursery so when she comes back it will be 3 times the risk😫).
My partner has been distancing from both myself and my son and I must admit I was glad of the contact with my son (even though he's 14, he still likes a hug every now and again!)
I can't be selfish and ask him to stay in it wouldn't be good for his mental health long term and although he talks to his friends on social media etc it's not the same as face to face contact. His school will probably return in September after the summer.
If your son is only seeing people outdoors, wearing a mask, staying 6 feet from them with no physical contact, then that is probably safe for him to go out and still have contact with you. But there should be no physical contact with others, he should wear a mask whenever he is out, and stay a good distance away from other people so as not to encounter infected droplets.
The government here have recommended a cloth face covering in enclosed spaces only.
My son told me he went to the local shop while he was out last week so that made the situation worse (even though I told him not to, he said he forgot 🤦🏼♀️) so we are now distancing for 14 days (since last Friday).
As this could begin to be a more frequent thing I think it would be sensible to distance from them both now to be safe.
The reason I would suggest the mask outside is that depending on the amount/direction of wind, whether the other person sneezes, coughs, sings, breathes heavily etc., the infected droplets from someone not wearing a mask can travel farther than 6 feet. So if you have a high risk individual at home, I'd recommend all family members wear masks if they are going to socialize with anyone, outdoors or in. If they're just out exercising and stay well away from others and not stopping to talk to them, then a mask might be optional if they carefully distance themselves away from others out exercising.
If you are in the extremely vulnerable group then nothing has changed for us. We should be shielding still including shielding from members of our own families who do not follow the shielding rules themselves.
Then you need to carry on shielding exactly as it said in the letter you got to say you were in the extremely vulnerable group. Currently they are saying we need to shield until at least 30 June. I’m sorry, this is bad news for you, no hugs yet for partner or son. But best to be safe. I’m getting very fed up of it all, I have to admit. But I shall do as I’m told for once! X
Sorry I think I may have misunderstood what you said. I am in the self isolate/social distancing category, not shielding. I haven't received a letter as will only be on one form of immunosuppression starting Methotrexate next week.
My first thought was what are your current sanitization process on a normal day/week and what extra precautions do you implement when someone (or thing) comes into the house? What is your family process when leaving?
Maybe it’s overkill but IMO any contact, even secondary (your son’s friend) would warrant a slight boost in your regime.
In our house, especially around the time of my infusions and changes in medications, we use much stricter protocol. I have AI compromises friends (of all types who also follow these processes). We’ve relaxed a little but are still very careful.
Would you like to know our standard operating procedure?
Hi katidid we are following the government guidelines of social distancing, hand washing, surface cleaning. My partner comes home from work, washes his hands, places his clothes in a separate bag and showers. He has been sleeping in a separate bed.
I'm not sure what the protocol is for parcels/letters and food shopping coming in, I've not heard anything about that?
The Rheumatology department told me that taking an immunosuppressant would not make me more susceptible to the virus nor would it make me any more vulnerable to it and to social distance. I made them aware my partner is working and they did not seem concerned. My gp told me to stay at home and that I am in the middle category.
First part sounds great, we do the same even down to the bag transfer! Groceries and packages were my choice because my SLE and PsA have been highly active.
What I find really surprising is what your Rheumy and GP told you. Immune compromised individuals (those with immune conditions on or off medication) are among the highest risk populations according to all the regulatory agencies - and TBH every health professional I and my network of AI peeps I keep in touch with. Maybe the doctors meant they don’t know if there is a link between taking immunosuppressants and a higher rate of disease contraction? Regardless, if you have Lupus or any other AI condition we fall into high risk and should absolutely follow stricter protocols. Saying “middle” category seems a tad underestimated. If I said that to my docs, I’d probably get smacked upside the head 😂.
Stay safe, use your intuition and smarts. ATEOTD it’s our bodies and we have to keep them safe.
Best of luck! Hope you find the best solution for you and your family ❤️
There is a score grid on the Lupus uk coronavirus website from the British Society of Rheumatology that tells you which of three categories you fall into based on your medication.
According to that I will be low risk on one form of immunosuppression. Also a flow chart from Chapel Allerton Rheumatology clinic which is where I'm treated.
I think I remember reading that they aren’t sure just how much low levels of immunosuppressants affects infection and vulnerability. On the hand, studies point to the fact that lupus itself increases incidence of UTI, respiratory infection and GI illnesses.
So what your rheumatologist said makes sense, I agree. One of the big concerns is a lupus patient being unstable with organ involvement.
I have mild UCTD, just got my COVID 19 antibodies back. They were positive. I came through my nearly three weeks of the virus very well. My doctor said the rheumatology clinic was documenting how lupus patients handle the virus. I will ask if he knows the results when I see him in July.
Even if you are low risk in terms of immunosuppression, you still have a chronic illness. I know you you know you have to be extra careful! 😷
The greatest risk is sustained contact in a closed space. Droplets 💧 not good.
I will try to find some good recent articles that address the “opening up” phase and how to reduce risk if you are interested.
Yes, though it is hard to get mixed messages about immunity. I certainly feel a degree of reassurance. I wear my sun hat with face shield and purell my hands but maybe not as OCD as I was! I can drink coffee or a glass of wine through the face veil and going out is a real treat. Last weekend in parts of New York it was like mardis gras. We need to tone it down. 😅
Sorry. Think I got off topic. I wonder if you could start seeing your partner outdoors while you are both with masks and six feet apart.
I am going to guess that if one person in the house is going out, that is a leak. But that doesn’t mean it is not okay. My niece has asthma. She does not leave her house. Her husband goes to work at a very small law office. He does the grocery shopping. They only socialize with the grandparents.
Hope that gives you an idea of what others do. Many variables and many interpretations of guidelines.
Now that I am antibody positive, I get all sorts of mixed messages. 🤪
Hi, I too am 'shielding' but trying to keep that going in a full house for this long was never going to work to the degree stated, we just dont have the room. My hubby is working but able to do so in isolation, my eldest son is a supermarket manager, and my teenage son is home. We've taken the sensible approach to this. From day 1 I have wiped all surfaces - rails, door frames, taps, knobs etc at least twice a day with disinfectant. I have grocery delivered or my son collects for me, and I wipe that over. I air the house as much as possible. We are all handwashing very frequently. I dont sit in one room. I have my own towels, cutlery, and crockery. I prepare all food so I know its 'clean'. When my hubby comes in he washes hands and changes. My eldest strips to his boxers in the hall, puts his clothes in the washer - touching nothing on the way - then showers. My youngest was in with me anyway. I avoid being in a small room with my eldest, but in the lounge we sit opposite sides. Now my other son is meeting with his friend once a week, same rules apply. I dont hug or kiss any of them, just blow kisses. I still share the bedroom with hubby. If anyone showed any symptoms of course this would be increased and they would isolate in our caravan parked on the drive, or in their room. I would not go near them obviously, or handle anything. So far we are ok. My eldest is convinced he had it in Feb anyway which I agree with but I didnt - that I am aware of. I am a nurse so I'm using barrier nursing techniques as if we have all have a diarrhoea bug constantly in the house !! I had to balance being shut in a room for 12 weeks and my sanity, and opted for very good hygiene, 6ft rule, handwashing lots, and a lot of common sense. Fingers crossed xx
Hi, sounds like we are in a very similar situation. I also didn't want to be in a room on my own for 12 weeks, I couldn't cope!
If my son now leaves the house to meet a friend outdoors and social distances does that mean he is now a risk to me when he returns? Is it anyone leaving the house that I should distance from?
Is your husband working from home? The only reason my partner is able to sleep in a separate room is because my daughter is staying with her boyfriend's family but when she returns we will also not have the room 😫
I wonder what will happen at the end of the 12 weeks. I can't see this changing until we have a vaccine?
I only distance from my younger son now as it is his girlfriend he is meeting and I dont quite trust 2 15yr olds to social distance, although he knows he could put me at risk if he does and I know that is playing on his mind. I'm just playing it safe. My hubby works out of the house but outdoors so he is ok and his customers do payments by bacs, or stick a cheque or cash in a jar which he leaves for 3-4 days and sprays, cleans anyway. Its hard because I'm trying to keep myself safe whilst allowing them the freedom they can have. A lot is common sense really and common hygiene etiquette x
You are only advised to isolate within your own household and not leave for any reason if you are in the shielding category (i.e. 'extremely vulnerable'). This is not recommended for those who are in the 'vulnerable', only strict social distancing is. This may seem strange initially because everyone in either category has a higher risk than the general population, but there is logic here.
It's all about balancing the risks with the negative impact of the restrictions. The risk for those who are 'extremely vulnerable' of transmission, hospitalisation and life threatening consequences is much higher. This is balanced with the negative impact of isolation from a medical care and wellbeing perspective, as shielding is set to go on for months. The government and NHS are therefore advising these extremely restrictive measures as the lesser of two evils. For those who are 'vulnerable' the government and NHS have decided on balance that the detrimental impact of those restrictions outweighs the increased risk.
From what you are saying, even when you start methotrexate you will still be in the strict social distancing or 'vulnerable' category. The advice for this category is that you can still go for a daily walk and should not isolate from your household, as long as you all adhere to strict social distancing measures.
If your husband and son are washing / stripping out of clothes when they come in the house, cleaning the door handle behind them, and are social distancing when out, the potential for transmission is pretty low. It would be higher if they for example went closer to people, weren't washing their hands after touching surfaces, weren't wearing masks etc. It's therefore really important to discuss this as a family and decide what measures you want to put in place.
Personally I am in the shielding category as I'm 'extremely vulnerable' and my husband is working from home. He has been going for daily walks with our dog, and has run a few errands outside the house over the last 9 weeks. Each time he comes home he washes completely, and then cleans the door handle. The advice is that I should isolate from him at all times but we have decided that on balance this isn't worth it for us. We are still sleeping together and not isolating from each other in anyway. We are staying home 99% of the time, and having our food / medications delivered. That is our personal decision and my medical team are happy with this.
It's important to state that the risk will never be zero even for people strictly following shielding guidance, so it's up to you the level of risk you are willing to accept for quality of life.
I hope this makes sense and provides some ideas for your own decision x
Hi and thanks for your reply. I felt like breathing a sigh of relief when I read it as i have been thinking for a few days now about the impact of such strict distancing from my own family in my own house.
I am starting to miss physical contact greatly and the last 7 days in particular I have noticed my son's sad face when he goes to hug me and I have said we can't 😥 (all because he went into a shop which is nothing he's done wrong).
I frequently have apologised that everyone has to be extra careful because of me and my immune system, I sometimes feel a bit of a burden, always having to make decisions around what I can and can't do, even before Covid. They never moan or complain about any of it.
I am happy with the level of hygiene etc that we are taking and based on what I have been told about which category I am in I do think we are doing what is necessary for my personal situation. I'm not spending every day worrying about what is coming into the house. I just want physical contact with them.
I would rather be sensible and happy than extreme and miserable. My son needs to start interacting outside of the house, his friends are the people he would normally spend most of his time with, at school and sports etc he was very active before doing 6 out of 7 days football, running and the gym.
I'm shielding, been on hydroxychloroquine for about 6 weeks, prednisolone for just over 2 months and am due to start methotrexate next week- steroids reducing every two weeks as methotrexate increases.
I'm terrified. The stress is making me ill. I'm dreading the side effects.
The first thing my rheumatologist said when he told me about the drugs I would be taking was that the chemo drug will poison me and make me quite ill for 2 days a week and the malaria drug will protect my vital organs from the poison.
He also said, just 2 or 3 weeks ago, that they weren't going to start me on methotrexate yet because the risk of me catching covid-19 from a nurse coming to the house to take blood once a fortnight was too high (I know, instils a lot of confidence!) yet just a couple of weeks later when, I might add, reports of positive cases in our area are increasing compared to a few weeks ago, it would appear either the risk has changed or meh... bored now...
And you wonder why I'm terrified?! With medics like that who needs horror films?!
Anyway, given his scare stories about what would, could, might, will happen, and being told to shield, I have been staying in our bedroom, on my own (I'm lucky enough to have an en-suite), while my husband sleeps on a blow up bed in the living room. I've had no physical contact with my husband or kids (15 and 18 yrs) since they have been out walking the dogs, doing the shopping and going to collect prescriptions. I have a wee chat during the day sometimes through the open bedroom door from a distance but that's it.
I thought it would be fairer on them for me to isolate from everyone so that, if advice allows, they will be able to continue doing whatever is allowed without having to worry about killing me by bringing a virus back while I have no immune system (another gem from the rheumatologist). I am concerned, and think our chats might have to be even more distant once I start taking the poison and have absolutely no idea how long this will be the case - I'm thinking vaccine - but what else can I do? I'm new to this condition/disease/whatever - I still don't know very much about it and how it has/is/will affect me. I would simply like to stay alive long enough to see my kids grow up and start their own paths so am doing as much as I can to allow that to happen.
Maybe I'm being over the top but how else can I be sure? The advice my rheumatologist gives me makes me think I don't have much choice.
Right. Switching off now and not reading any more posts for a while, they always make me so depressed.
Hi, I'm sorry you are feeling like this. I think your Rheumatologist is very wrong to have explained it to you that way.
Heatherevans28 has made a very valid point about weighing up personal risks/benefits and I understand that given the horrifying information you've received so far, you would feel frightened.
There are lots of lovely people on here who can give you advice based on personal experience.
I hope that reading their posts will help you, not make things worse, I know I have found great support at times when I have felt worried about something.
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